Band angels help Boardman girl achieve dreams despite rare disease

“Baba O’Riley” is among the most infectious rock anthems of all time, with riffs and lyrics that beg you to join in.

Officially among The Rock and Roll Hall of Fame’s “500 songs that shaped rock,” it’s the signature performance for this year’s Boardman High School band.

On a brisk October day in the Boardman High parking lot, band director Tom Ruggieri is guiding the 184-member band through “Baba” as frenetically as The Who’s Pete Townshend whips his arm around his guitar.

A mic set wraps around Ruggieri’s head to carry his voice over the speakers as he talks, walks and teaches the 184 band students. They’re playing “Baba” without missing a beat, and neither does he when the trademark drum roll kicks in about two minutes.

Kaitlin is pretty much confined to a wheelchair — a dreadful birth gene that was eventually diagnosed as Friedreich’s Ataxia. It’s muscular dystrophy, scoliosis, heart weakness, circulation problems, diabetes and more rolled into one tragic syndrome. Her muscles are tightening up all around her.

But her spirit is not a muscle. It’s free.

When she reached high school and Ruggieri this year, they committed to Friedreich’s not keeping her from the band, either.

With the rapid and intricate movements of a high school marching band — from twisting tubas to dipping drums to majorettes — it’s no place for a wheelchair to be rolling around.

You would think ...

Meant to be

For Ruggieri, Kaitlin’s spot in the band started long before he ever met her.

Several years ago, he watched a news program about a college marching band. In it was a wheelchair-bound student whose dad learned the march routine so he could push his son on the field.

“I choked up when I saw it,” said Ruggieri. “I put myself in that position and wondered ‘How would I do it?’ I thought — I would like to make that happen some day.”

That “some day” came last spring.

Kaitlin has been in school band since fifth grade. She had dreams of being in the Boardman High band.

Walking has always been a challenge with her disease. Halfway through eighth grade last year, the curvature in her spine had progressed that she needed rods inserted in her spine to straighten her. It made her walking even more unstable, and a wheelchair safer.

“Mr. Ruggieri already knew of Kaitlin and her interest in band,” said dad, Howard. “He got a surprise with the wheelchair, though.”

Kaitlin’s mom, Chrissy Longley, did not want Kaitlin’s feelings hurt.

“She really wanted to be part of band, but I didn’t want to get her hopes up,” Chrissy said. “The last thing I wanted to do was have her sign up and learn that she had to sit on sidelines.”

Ruggieri didn’t want that either.

“We have the same expectations for all our kids,” Ruggieri said. “Never are all kids at the same level of music or marching. We work with all of them.”

For Kaitlin to play her flute in the Boardman band, an adult would need to learn all the drills and push Kaitlin around the field at every event. Howard’s and Chrissy’s work schedules would not permit them.

Ruggieri needed someone to volunteer.

He got two

“It brought back memories of my band life at Springfield,” said Beth Bean, band booster club president and mom to band members Jeff, a senior, and Kristine, a freshman. This summer, she added the role of Kaitlin’s away game partner.

Kaitlin’s home games were handled by Ruggieri’s daughter, Rachel, who came home from Kent State to help out.

It was an easy fit for Beth and Rachel as they were set to be at the critical band camp anyway to assist Ruggieri. The three of them got started together at August camp in Erie, Pa., and Mother Nature tested them from the start.

Rain-soaked fields, mud, slogging — it was a tough introduction to their new partnership.

“We started with the worst conditions, so it could only get better,” Rachel said.

Kaitlin laughs at those first days.

“I almost fell out of my chair twice,” said the 14-year-old who, with her brother Blake, 12, splits living time between her parents’ Boardman homes.

Beth recalls one tipping moment.

“I turned too fast and was not used to the chair yet, and I hear ‘Mrs. Bean — I’m tipping,’” Beth said with a laugh.

Both Beth and Rachel said if you think their job was tough, try being Kaitlin and playing the flute while all this was going on.

“She did the best to play flute while we bumped around,” said Rachel. “It was just nice to see her happy and enjoying the band.”

Already solved for the Boardman band next year is who will handle Kaitlin.

Beth and Rachel are already set to go. And Kaitlin no doubt expects to be there.

Their challenge:

What will Friedreich’s allow?

Friedreich’s & fault

Don’t read the Internet.

That’s the first thing Howard and Chrissy were told when came Kaitlin’s diagnosis of Friedreich’s Ataxia.

It came the summer before fifth grade. At summer camp, a curvature in Kaitlin’s spine became more noticeable. They always knew something wasn’t right about Kaitlin’s motor skills. They’re delicate when they describe it, yet perfectly blunt:

“When she walked, she had this stagger like she was drunk,” said Howard.

Still, she had a normal kid life — ballet, baseball, etc. They saw small things, but they were dismissible. Friedreich’s itself is often not diagnosed until teen years or later, said Chrissy. That all changed that summer as the disease took control.

“It affects everyone differently,” said Howard.

The impact of the diagnosis came to the family in stages.

“First they told us the ataxia part — a tightening of the muscles, and I thought, ‘oh well, no biggie — therapy and stretching,’” said Chrissy.

“Friedreich’s is a whole different ball game.”

FARA stands for Friedreich’s Ataxia Research Alliance, and it’s one place on the Internet that Chrissy finds solace. FARA describes the disease as a degenerative neuro-muscular disorder that affects about 1 in 50,000 people in the U.S. The effects include:

• loss of coordination in the arms and legs.

• fatigue, energy deprivation and muscle loss.

• vision impairment, hearing loss, and slurred speech.

• aggressive scoliosis.

• diabetes.

• serious heart conditions.

Of all those harsh realities of Friedreich’s, one reality strikes just a bit harder:

It is genetic.

Brother Blake has it as well.

You cry

“I was in Columbus for work,” said Chrissy when she got the news. She and Howard ended their marriage long before Friedreich’s entered their lives. “I was away from the kids, so they could not see me break down. It was so hard to grasp. I did not function for days.”

Remember the doctors’ advice to not read the Internet?

“I read it all .....,” said Howard.

“I was in tears for months.”

Chrissy struggled with guilt.

“It’s a horrible feeling knowing it’s a genetic disease. As a parent — I know that it came from me,” she said.

Although it affects 1 in 50,000 Americans, how it happens seems almost a tragic fluke.

The gene can exist and be defective in any one person, and there are no problems. That’s Howard and Chrissy.

When those two people who have that defective gene have children, there’s a 25 percent chance their offspring will have the disease. That’s Kaitlin and Blake.

The disease is a slow deterioration of the body.

“They say ‘today is the best day you will have’ because you don’t know what tomorrow brings,” said Chrissy.

With two children affected, Howard and Chrissy have been able to watch what the doctors advised: It affects everyone differently.

Kaitlin’s handled it well overall.

“Once in awhile,” said Chrissy, “she’ll break down with a ‘why me.’ Then she just kind of rocks on and figures it out.”

Blake’s determined that he won’t be in a wheelchair, said Howard. And they notice that physical effects on him are less than Katlin’s. But Blake required glasses at an earlier age — the disease affected his eye muscles.

Financial challenges

As imaginable, how to function and finance such a family challenge is a daily puzzle.

Both parents work, and Howard’s insurance covers the medical needs fine. But the life things are tough.

Howard’s Cornersburg home — the “first house in Boardman” he laughs because he sits right next to a Youngstown home — needed a new bathroom and a wheelchair ramp.

Kaitlin’s special wheelchair cost $10,000 and was covered by insurance, but took nine months of agency approval. And when the wheels snapped during a park outing, that $1,400 repair was not covered by warranty or insurance.

Chrissy credits Howard with spending two years of searching agencies and the Internet to help meet their needs.

“It’s just crazy,” said Chrissy. “The stuff you have to sign up for, just so you can be denied, just so that you can qualify for other things ... You have to go through so many motions to get some help.”

And as workplace health insurance policies churn, Howard pauses. He pays $260 per month for expenses, and he monitors the calendar for his own medical care to ensure the $4,000 deductible is met. And he’s aware of his company reports.

“It’s tough to know that 7 percent of a workforce causes 75 percent of a company’s health care expense. You get uneasy when you know your impact,” he said.

They’ve applied to the Mahoning County Board of Developmental Disabilities, but the kids’ conditions aren’t covered. He earns too much for Social Security assistance.

But they find options. Through Kaitlin’s physical therapist Cathy O’Shaughnessy, Howard connected with the Difference Makers charitable group, and a new wheelchair ramp was constructed onto his front porch. He’s currently in the process of making his bathrooms wheelchair-accessible at a price of $10,000.

Lessons in life

Amid all of this, they push on with as normal a life as Friedreich’s allows.

Blake and Kaitlin are A and B students. Kaitlin finds a special place with helping Boardman’s special-education students. She’d like to be a nurse when she’s older.

Being in a wheelchair has actually eased things for her, Chrissy said.

“With the chair, people now know there’s something not right. Where as before, people thought she was drunk or something.”

It’s not about wondering what might have been, but simply dealing with what is.

“This is the hand you’re dealt,” Howard said. “You simply have to step up and make things happen for them. I try not to dwell on something I can’t control.”

Chrissy admits to having had doom-and-gloom issues. She said her boyfriend is more of a one-day-at-a-time type, and she’s learned such.

“I never discourage her to not do a thing. She’s had a boyfriend. She went to homecoming. She’s in band. As we’ve gone on, I’ve come to realize it’s all that we make of it. And we’ll just deal as things progress.”

Through others and the FARA website, they learn and hope. Scientists are working on a cure.

“My hope is they find something before the kids get too far along,” said Chrissy.

Howard keeps in contact with a Friedreich’s lady who, at 32, just had her first child.

They learn, and they live, and they’re blessed when people care.

Friends old & new

It’s odd when not getting a call is good.

“Not getting a call during band camp was a great feeling — a sigh of relief. It had worked and it was going well,” Howard said.

Around Kaitlin is a core of kids who’ve been friends since kindergarten: Courtney Segool, Shannon McMaster and Emily Mook.

They form a tight ring around Kaitlin — aiding with all her needs as needed at the dorm, on the bus and more.

“Her friends are so welcoming to her. They’re the most loving people,” Rachel said.

And occasionally in life, you bump into new folks like Ruggieri, Rachel and Beth, willing to figure out new things.

“I was floored at how much they’ve invested in her,” said Chrissy, who was watching video posts throughout the week of band camp. “This was a huge deal for Kaitlin.”

Rachel was nervous, she admits. She asked her dad what if this doesn’t work.

“He said, ‘We’re just going to make it work,’” she said. “I love that he’s not afraid to take risks that others would push away.”

Ruggieri said being in band is about adjustments and acceptance, and this was just the same — even though that TV segment was his only evidence of seeing it work in his 25 years.

“None of us looked at it as ‘It’s a great thing we’re doing.’ It was simply: This is what the band needs; let’s do it.”

It’s hard to imagine where Friedreich’s Ataxia takes Kaitlin. But you can imagine who’ll be around to figure it out.

The “Baba” verse that starts with “Sally take my hand ...” closes fittingly.

“The happy ones are near; let’s get together, before we get much older.”

Todd Franko is editor of The Vindicator. He likes e-mails about stories and our newspaper. Email him at tfranko@vindy.com. He blogs, too, on Vindy.com. Tweet him, too, at @tfranko.